CHOP Partners With Ethiopian Family to Spread Down Syndrome Awareness

In January 2021, members of the Trisomy 21 Program at Children’s Hospital of Philadelphia (CHOP) embarked on an educational partnership with pediatricians at Black Lion Hospital in Addis Ababa, Ethiopia. Inspired by our patient, Christian Admasu (a thriving 6-year-old growing up in Philadelphia), a series of web-based meetings was arranged to discuss medical and developmental issues related to kids with Down syndrome in his country of origin. (See the full story from a past newsletter).

Soon, members of the Deborah Foundation, an advocacy organization that supports individuals with developmental disabilities in Ethiopia, also joined the virtual sessions to learn from our expert faculty. Understanding the implications of Down syndrome, accessing information, medical care, and educational services is still a struggle for most families in Ethiopia. The Deborah Foundation’s mission is to improve inclusivity and quality of life for people with developmental disabilities.

Recognizing their tremendous need for educational materials, CHOP’s Trisomy 21 team committed to collecting items that would benefit both the staff of Deborah and the families they serve. When the Admasu family planned a trip to Ethiopia in summer 2022, a large suitcase of textbooks, reference guides, picture books and toys was filled and ready to send.

The Admasu family was invited to tour the facilities at the Deborah Foundation, including the first school for children with special needs in Ethiopia – yet to open its doors to students. The family presented CHOP’s gift and received an overwhelmingly emotional response: The school had just been completed, but the library was empty. Our books would be the first on the shelves.

The inauguration of the school was a community celebration, attended by the president of the country. There were speeches filled with hope, music and dancing enjoyed by all – young Christian, in particular!

Christian’s father, Benyam, demonstrated the use of Christian’s AAC device for officials at the event and suggested that with some modification of the icons and translation to their language, similar devices could be introduced in Ethiopia. The prospect was met with enthusiasm and plans to move forward with this worthwhile project.

Benyam also connected with several attendees who informed him, “I have a cousin … a neighbor … a friend … who has a child with Down syndrome.”

Benyam wrote down names and addresses and in subsequent days traveled door-to-door to bring them news about the Deborah Foundation.

“Look at my son,” he explained. “He learns in school and now your child can go to school, too.” Many were convinced to go and see for themselves and marveled at the beautiful new facility built especially for children like theirs.

The Trisomy 21 Program would like to continue to support our colleagues in Ethiopia and deliver another shipment of books as soon as we have a volunteer traveler. We are grateful for donations of any educational items related to Down syndrome or books/small toys loved by children of all ages.

If you are interested in helping, you may bring your donation to your child’s next Trisomy 21 Clinic visit and it will be held until our next shipment is sent. For more information about this partnership, please contact Alyssa Siegel at siegela@chop.edu.